allergist update

Cute boy had an appointment with the allergist. A different doctor than last time (which is a very good thing). He was retested. The good news is his peanut and soy scores looked fantastically low (yay!) So the plan is to try to introduce those things one at a time for two weeks and see how he does. The bad news is his chicken, eggs, and dairy, were obscenely high (boo!) and she encouraged me to keep the epi nearby always. She was very surprised about the chicken, that's a weird one for anyone to be allergic to. 

We tried to introduce soy on Sunday. He ate a few bites  of pizza with soy cheese. Then he was up all night crying. So we gave him a break on Monday and he slept just fine. On Tuesday we tried again, and he only ate a few bites again. He was up crying all night. So now we are taking a break for a couple weeks before we try again. I just want to make sure it's not a coincidence.  Then we will try peanuts later. 

*sigh*

In good news he is finally drinking his Elecare. That nasty stuff gets him the nutrients he misses out on by not eating his allergens. So Yay G! 

our crabby happy Easter

I stayed up far too late on Easter eve, finishing up a couple neckties for the boys.

I really thought that I was thiiiis close to having them done,

I didn't realize it would be just after 4am when I finally went to bed.

Staying up so late destroyed my idea of a simple Easter, but I kept it small by just having the ties, a chocolate bunny, cheap water guns, and bunny ears in the baskets.

Sweet G isn't sleeping well lately (hands up who's surprised?) so Kelly got up early with the boys and I slept in til 7:30.

Our morning was not exactly a picture perfect Easter morning.

It was a mess.

Everything was a mess.

So much a mess, that we were at church for only 20 minutes before we left and just went home. (thankfully we were there for the most important 20 minutes)

All four of us were not at our best.

But oh how lucky I am to have all four of us, in any condition.

Here are some of the wonderful things that went right.

Most important, we talked about the resurrection.

Here's how our conversation with our almost-3-year-old went.

Us: "Jesus died and his friends were so sad, they missed him so much. His friends put his body in his special cave and rolled the big rock in front of it. After three days, Jesus was resurrected and was alive again! Yay! His friends were so happy! And because Jesus was resurrected after he died, after we die we can be resurrected too! Yay!"

Jelly Bean: "Yay! Now I can die!"

We retold the resurrection story the rest of the day, adding a little more each time, and each time Boston filled in part of the story he had learned the time before. In the days after Easter I asked him about it and he remembered the story well.

thanks to a kind neighbor for giving me a bunny mold, I made a chocolate bunny for Sweet G. He was able to enjoy the same treat as his brother. It was priceless.

We had a little egg hunt in our backyard.

We went to my parent's home for dinner.

The weather was perfect all day.

This little family, all at our wits end, is my little family.

And while we are feeling overwhelmed, exhausted, moody, and frustrated, I still feel the joy as strong as it ever was.

This is my little family

my crazy dramatic funny little family.

and I am the luckiest.

egg hunt

our little townhouse neighborhood held an Easter egg hunt.

Bo understood what was going on and he loved it.

he seemed to think every egg had been left there just for him.
he is convinced his easter basket is a turtle, and definitely not a dinosaur.

G wasn't too into collecting the eggs, but he was happy to be outside, despite the chill.

biopsy results

G's biopsies came back negative.

it's a good thing that he doesn't have anything serious they tested him for.

but it's frustrating.

So we've been told to keep taking the meds that are keeping him pain & vomit free for the next 3 months, then we will try something else.

but we are moving across the country in just over 2 months away from a fantastic children's hospital and toward a very small town.

It just feels so unresolved.

Best case scenario - pray for a little miracle and hope his issues just disappear on their own.

It could happen, right?

a cake for Reed

It feels good to create.
Every once in a while I create a cake.
I keep them rare, it's better for my family if I do.
Remember the cake I made for Melanie a few months back? This is for her beautiful twin Reed.
Reed did not disappoint, I love her choice and I'm very happy with it.

Making something pretty makes me happy.
It also exhausts me and reminds me how grateful I am for sleep.
Kelly, I can't do these without you. Thank you love.

I'm not a professional, I haven't taken a class. That would be fun to do someday when the timing is better. Maybe I'll even go to cake camp (yes, that really exists). There are a hundred easier techniques I should know, really, you probably know something about cakes I don't. But so far, I do pretty well BSing my way through.

pictures by Chris Messenger Photography

egd

Sweet G was doing really well on his meds,

he was like a normal baby who just happened to have food issues,

it was lovely.

But the meds were supposed to be short term,

they were supposed to fix his issues, wouldn't that have been wonderful?

so after a few months on them we had to wean him off

......and it all returned

So this afternoon, while Kelly was taking his last day of boards,

G had an EGD.

That stands for Esophagogastroduodenoscopy.

Which isn't as scary as it sounds, but still a bit stressful.

Basically, they put him under, look in his esophagus, stomach, and upper intestine, and take pictures and biopsies.

Because of his food issues and throwing up issues, they couldn't do it in the GI Clinic and had to do it in same day surgery.

He was grumpy when we went in, but since his med changes he hasn't been feeling good anyway. I sang him his goodnight song and we gave each other kisses. The moment they took him out of my arms, I kept my voice cheerful and blew him kisses goodbye, but my eyes were already filling. I might have cried a little when he left my sight. He just looked confused.

After it was done, the surgeon met with me and told me all went well, and the only physical abnormality he could see was an indentation in his esophagus that he recommends get looked at another way. He said a simple upper GI should show enough contrast from the outside to tell them if it's anything. But we are going to wait until biopsy results before scheduling that. Then he left and G was supposed to stay in the recovery room for an hour or so. But 20 minutes later they called me to come up and help calm him down. They kindly kept his panda with him during the whole thing, and he was clutching onto it for dear life and screaming as loud as a hoarse voice could. He was still upset when I held him and I didn't think his screaming improved much, but they said there was a huge difference. He kept trying to rip out his iv, and take off his hospital gown and socks and id bands. I let him pull his gown off and he tried to put his own shirt on himself, he wanted out of there and away from anything that had to do with that place. We had to stay there for a bit so they could make sure all was well. he didn't really calm down until we were walking outside and he saw our car.

The rest of his day was sleeping and cuddles.

Today was stressful, but there was much to be thankful for,

Bo was happy to have a play date with his Ella for the day, and that was a wonderful help,

a dear friend arranged a tasty dinner for us that even G could eat, no small task,

I received sweet texts from dear friends offering support, it meant so much,

a friend's little boy has been through similar issues, and just talking with someone who gets it helps so much,

Kelly's boards went well, all his patients showed up and he was able to focus and not worry about G the whole time, whew,

The doctors and nurses at Children's Mercy are all wonderful, and I'm happy with how everything was handled,

All of G's doctors are fantastic, he's so lucky to have such a great team.

And I am so so so hopeful that it will give us the answers we need to best help G.

valentines day part one

We didn't have too much planned for Valentines day. Kelly and I don't exchange gifts for this holiday, just little gestures and dinner at our usual place. B made valentines and he was very excited to give them to friends. I put together a little gift for the boys - a picture book, a mailbox, and a valentine card that I somehow managed to save from the 80s.

but then my little B got sick with a fever and cuddles.

So we cancelled our date and valentines day along with it.

His fever is going on day four tomorrow,

and he still is asking if valentines day is coming soon.

We tell him yes, our valentines day is coming soon.

So next week if he comes to your door and hands you a valentine, just go with it and tell him happy valentines day.